I met Brian and Mel in the CCCU waiting room after Josh’s second surgery, their son Tyson who is now three years old is one of the kids who was born with CHD… this is thier story written by Mel.
Immediately after he was born, Tyson began having problems. The first indication that something was wrong was when, for the first 24 hours of his life, he couldn’t keep his body temperature stable. Although his body temperature stabilized after his first day of life, the next couple of days presented even bigger problems. Tyson never once woke up to eat, he slept 7-8 hours through the night, and he developed bad jaundice, was lethargic, and eventually began breathing rapidly. At eight days old, a trip to the local emergency room for some phototherapy to treat his jaundice resulted in a much lengthier hospital stay than we had anticipated. IVs were placed in his head because his arms were too tiny to find a vein, a spinal tap was done, and various tests were run. The conclusion was that Tyson was in heart failure and his other organs were beginning to shut down. An echocardiogram at Headwaters Health Care Centre in Orangeville revealed that he had “a rather large hole in his heart.”
From there, Tyson was admitted to Toronto’s Hospital for Sick Children, where it was discovered that Tyson was born with 4 severe CHDs as well as two holes in his heart. He was diagnosed with Hypoplastic Right Ventricle, Tricuspid Atresia, Transposed Great Arteries, Coarctation of Aorta, with a VSD and an ASD.
In short, the right side of his heart is completely underdeveloped (basically, he has half of a heart), his main arteries are mixed up, his aorta is narrow, and he has two holes as well. We were told that Tyson would need to undergo a series of at least three open-heart surgeries in the next two to three years, the first one being scheduled in a matter of days. The goal of the surgeries was to re-plumb his heart, so that the under-developed right side of his heart would be completely by-passed, leaving the left side to do all of the work.
Tyson underwent his first open heart surgery at 13 days old, spent three weeks recovering at Sick Kids, and made it home in time to spend Christmas with his mom and dad, two older brothers, and one older sister.
The winter months were extremely busy; Ng tube feeds, low-fat portagen formula every 2 1/2 hours round the clock, pumping breastmilk, cleaning up the aftermath of reflux problems, and administering the seven different medications that Tyson had to take. The medications were to strengthen his heart, prevent fluid retention, help with reflux, and prevent blood clots since he now had a Gortex shunt placed in his heart.
The blood thinner used to prevent the clotting was an Enoxaparin needle which we had to inject into his legs twice a day, morning and night.
If that wasn’t enough to keep us hopping, we also went for weekly, bi-weekly, and then monthly check-ups at Sick Kids, as well as regular appointments to the pediatrician, regular appointments to his family doctor for his immunizations, and monthly Synagis injections to prevent RSV (a virus that causes very serious respiratory tract infections.)
Despite our attempts to keep him in a bubble, Tyson struggled with his health through much of his first winter because of his compromised immune system. His life was spared again when he was four months old and had to be hospitalized because of a serious pneumonia infection, causing him to be intubated and in Intensive Care at Sick Kids for almost two weeks. In May 2009 when he was five months old, Tyson had his second open-heart surgery, after which he developed another pneumonia infection.
After his second surgery, his health was much better; he still seemed to catch quite a few colds but avoided any hospital stays until March 2010. His third open-heart surgery was in December 2010. During this surgery the surgeons at Sick Kids attempted to re-plumb his heart so that the left side would do all the work since his right side was effectively useless. They also attempted a repair on his left pulmonary veins, the veins responsible for carrying oxygen-rich blood from his lungs back to his heart. These veins are dangerously small and are only carrying about 18% blood flow to his heart. Unfortunately, this surgery didn’t go quite as they had planned and they were unable to repair these veins as hoped. At Tyson’s most recent surgical team meeting, where the surgeons and cardiologist meet to discussing Tyson’s care, it was decided that there are no more surgical options left for Tyson besides a heart & lung transplant.
Today, Tyson is an energetic three year old who is developing almost normally, talking his mother’s ear of every day, and loving all the things that typical three year old-boys love: hockey, sports, books, music, and, of course, Sidney Crosby. In fact, his health is so good right now that, if you didn’t know he had such a serious heart condition, you’d probably never guess it by looking at him. It is such a blessing that he is doing so well! Unfortunately, because of the severity of his heart and lung conditions, his health will inevitably begin to decline. His oxygen saturations will begin to decrease and his heart will inevitably begin to fail. But we live each and every day in the joy and comfort knowing that not a hair can fall from our heads without the will of our Heavenly Father. Through this experience, we have learned not to take one single day for granted, to enjoy every possible minute with him that we can, and to appreciate every day as a blessing from God. Every morning we wake up and are thankful that God has given Tyson another day with us; another opportunity for us to love him and care for him, and to see the laughter and joy that he brings to our lives.
We are often reminded that if Tyson was born in 1978 instead of 2008, there would have been nothing that they could have done for him and we would have just taken him home under palliative care. But since then, there have been so many advancements in medicine and technology, that doctors have been able to come up with ways to prolong the lives of children with severe congenital heart defects.
Even in the early 1980’s when these surgeries were first being performed, survival rates were low and many babies did not make it. Now however, more and more babies are surviving the first and most risky surgery called the “Norwood’, usually performed within days of birth. Then they are able to move on to the “Glen”, typically performed between 4-6 months of age, and the “Fontan” performed between 18 months – three years of age. Even still, Hypoplastic Right or Left Heart Syndrome is responsible for 25 per cent of all cardiac deaths under one year of age. With those kinds of odds, we spent hours in prayer, begging God that Tyson could beat those odds, and asking Him to spare his life.
Over time cardiologists and surgeons are perfecting the techniques used to perform these risky surgeries. More and more children are making it into adulthood, resulting in a growing population of young adults who require life-long cardiac care. According to the Canadian Congenital Heart Alliance for Life, there are an estimated 100,000 adults with CHD across Canada (outnumbering CHD children). At least half face the prospect of complications, multiple surgeries, and premature or sudden death. In Ontario, there are roughly 40,000 adult CHDers, as well as 40,000 CHD children. However, there are only seven cardiologists who are formally trained in the care of adult CHD patients, and only four surgeons with adult CHD expertise.
There are far fewer resources allocated for the care of adult CHDers than other cardiac patients, resulting in long wait times for clinic appointments and surgeries. This puts these adults CHDers at greater risk of death.
There is still so far that we have to go to raise awareness of congenital heart defects. Many people aren’t aware of the dangers of CHDs, and their cause is still unknown. Some are known to be associated with genetic disorders such as Down syndrome, but the cause of most CHDs is unknown. Often prenatal ultrasounds are not sufficient in diagnosing the problem. If a woman is at higher risk for carrying a baby with CHD, (if she already has a child with a CHD), she should have a fetal echocardiogram done to determine whether or not there are cardiac concerns. As was the case with our son, I had a routine prenatal ultrasound at 20 weeks pregnant, but was sent for an additional ultrasound since the first one didn’t give an adequate view of my baby’s heart. Ironically, this repeat ultrasound reported that our baby had a healthy, four chamber heart.
Since CHDs often go undiagnosed prenatally, I believe that funding should be made available for all babies to have a pulse oximetre reading shortly after birth. This would allow the doctor or midwife to monitor the baby’s oxygen saturations in the blood, and therefore aid in early detection of congenital heart defects. In this way, hundreds of babies’ lives can be saved. I cannot explain how or why Tyson was able to live undiagnosed for 10 days, since his CHDs are so severe that he could have died within hours of birth. But I do believe with all of my heart that it was only by the grace of God that he is here today, and I know that He has big plans for our little heart warrior.